The breast cancers we don’t talk about

“The first inkling I had that something was amiss was a sense that my body was failing. It’s hard to articulate because there were no aches or pains, but something didn’t feel right. Soon after, in May last year, I noticed my right breast was distinctly larger than the left.

A couple of days later it started getting really itchy and swelled more, so I rushed to see my GP.

Initially, they thought it might be mastitis, which apparently can happen to all women, not just nursing mothers.

But when antibiotics didn’t clear things up, I was sent for a mammogram.

They thought it was another type of breast cancer and I was told not to worry as the survival rate was high in Australia. It was only after I was referred to the breast cancer clinic that they discovered it was inflammatory breast cancer (IBC), a far more aggressive type. I was in shock; I asked if they’d caught it early. Unfortunately, unlike regular breast cancer with its lumps and bumps, by the time IBC symptoms such as swollen, itchy breasts show themselves, it’s usually already advanced.

There were two days when I didn’t cope and I cried a lot, but then I decided to keep positive and fight. To that end, I told doctors I didn’t want to know what stage cancer it was. To this day, I still don’t know.

Treatment is aggressive: five months of chemo followed by amastectomy, radiotherapy and 10 years of hormone medication. This month, I’ll have a breast reconstruction. Since I can’t have implants [the skin doesn’t stretch after radiotherapy], they’re going to use abdominal fat instead, so it’s like I get a free tummy tuck.

Unfortunately I’ve developed lymphoedema [swelling of the arms] and just had to have 27 lymph nodes removed from my armpit and breast. The fight is ongoing, but I like to think cancer has helped me take stock of my life. I used to waste time fussing over silly things and now I can see what’s really important. It’s just a pity that it often takes something like cancer to see the light.”

What is Inflammatory Breast Cancer (IBC)?

This rare and aggressive form of invasive breast cancer makes up 1-2 per cent of all breast cancers. IBC causes a blockage of the lymphatic vessels in the skin, which are responsible for removing fluid and other waste products from the body’s tissues to prevent infections. Symptoms include a red, hot or swollen breast, or a rash or dimpled skin. Learn more at canceraustralia.gov.au

“I can still remember the look on my doctor’s face when he felt the lumpin my left breast in 2009.

He went from the standard, ‘Don’t worry, in 95 per cent of cases it’s a cyst’ to something far more serious. A mammogram and ultrasound revealed five lumps in my breast and two in my axilla [armpit]. It was only after I saw the breast surgeon that we discovered the cancer had spread to my liver.

Nothing can prepare you for that kind of news. I was told that as the cancer had metastasised [spread to other parts of the body], the chances of survival weren’t great.

I was petrified but I went into ‘mum mode’, doing my best to protect my two kids [then 26 and 23] and two step-kids [8 and 6] from the news. It was futile. Along with my husband, family and friends, they gathered to give me support as I summoned the strength to fight.

The type of breast cancer I had was HER2-Positive breast cancer, which grows rapidly, so treatment began immediately. I had chemo every three weeks for 18 weeks. My body responded so well that I didn’t need a mastectomy.

Four weeks after chemo finished, I had an axillary clearance [removal of lymph nodes from the armpit]. Four weeks after that I had a section of my liver removed, then 30 doses of radiotherapy over six weeks.

To help my body grow stronger, I also changed my diet, beganmeditating and exercising, and adopted positive thinking. The combined treatment methods were a success; in 2010, scans revealed that my body was clear of cancer. I was thrilled.

In 2011, a scan showed that the cancer had come back in my brain. We were devastated. Fortunately it was in an operable section and they were able to surgically remove it, but the fear remained. From then on, every appointment I went to, I wondered if this was it? Were they going to find something else?

A couple of weeks before my daughter’s wedding this year, it came back in my neck. I started chemo and continued it until June. I’m now classified as “no evidence of disease”.

My experience has turned me into what I call an ‘optimistic realist’. I’m realistic because I know there’s every chance it’s going to come back again, but optimistic that it won’t be the end of me. I don’t think about the future anymore because it does my head in. Now all I can do is live in the moment. And being in the moment isn’t a bad place to be.”

What is Secondary Breast Cancer (SBC)?

Also known as advanced or metastatic breast cancer, SBC develops in 20 per cent of breast cancer sufferers, but makes up a small percentage of first diagnoses. It occurs when cancer spreads from the original site in the breast to other parts of the body. SBC is incurable but can be controlled for many years. For more information, visit bcna.org.au

Gillian says having secondary breast cancer has made her an ‘optimistic realist’